Question:
My wife has CLL and went through only one round of chemotherapy. Between 3-4 weeks thereafter, she developed a rash. The on-call doctor prescribed prednisone and she responded in the opposite – gaining over 12 pounds of water weight, blistering all over her arms and legs, and her entire face blew up. She only took the first day of the prednisone regimen. She was out of work for an entire month, and it took over 2 months for her to return to normal. Due to her reactions, the oncologist commented that he did not know what her next treatment of chemo would be. Fortunately, after only one round of the chemo, her WBC went down to 4.8 (8/2018).
Her latest test indicates her WBC is now up to 14.3. Last January it was 10.2 and the previous July it was 7.8. My wife works for a hospital system in West Virginia, which soon may be requiring all their employees to get the COVID vaccine. If she doesn’t get the vaccine, she will lose her job and medical insurance, unless we have medical support.
We are concerned that due to her reaction to the chemo and really bad reaction to prednisone if she gets the vaccine and has a reaction, what can they do for her if it is severe?
I have spoken with people at both LLS, and the American Cancer Society and they say there is still very little available information to make an intelligent decision and that we should discuss this with our oncologist. We understand that this is entirely new territory, but I am concerned that she might end up in the ER and they either won’t know what to do or they might screw it up! I would greatly appreciate any incite or advice.
Answer: We apologize that this may be a bit of a long response, but there is a lot to unpack here!
First and foremost, please make sure your wife is being seen by a CLL expert! Chemotherapy is no longer the standard of care for CLL and should be reserved only for a small subset of patients that are younger and healthy and have a mutated IgVH status. This is because we know that patients with a “mutated” IgVH immunoglobulin do much better with chemotherapy-based regimens than those who are unmutated. There are many other great treatment options that not only work better than chemotherapy in CLL but produce far less adverse reactions such as what your wife experienced. Here are several articles we have posted on the website that you might find helpful on that:
- https://cllsociety.org/2019/09/ash-2018-dr-nitin-jain-on-combining-ibrutinib-with-fludarabine-cyclophosphamide-and-obinutuzumab-for-igvh-mutated-cll-patients/
- https://cllsociety.org/2018/09/what-is-igvh-and-why-is-it-important
- https://cllsociety.org/2020/01/iwcll-2019-dr-danielle-brander-on-bendamustine-and-rituxan-br-versus-ibrutinib-based-therapies-for-frontline-treatment-of-chronic-lymphocytic-leukemia-cll-in-elderly-patients/
Second, before she has any further treatments, please make sure she has had the appropriate biomarker testing before any further treatments are decided upon. You can read more about that here:
CLL Society continues to strongly advocate heavily for COVID-19 vaccinations not only for CLL patients, but everyone else in the household who are in direct contact with them as well. Although we now know some patients with hematologic malignancies will not mount a full antibody response compared to healthy individuals, vaccines are generally safe, and offer protection to the majority, but not all cancer patients.
It sounds like because your wife has had responses to chemo and another drug, you have good reason to be concerned about adverse reactions. But that does not necessarily mean she will have a reaction to an MRNA vaccine. The Pfizer vaccine consists of only four ingredients: Lipids (fat), salt, sugar, and the MRNA. Pfizer has a lesser dose of the MRNA than Pfizer, so you might consider that and discuss it with your healthcare provider. Another thought would be to have your physician arrange for her to receive the vaccine in a location close to the ER where she can receive epinephrine should there be an adverse reaction.
There are no additional risks for CLL patients to receive the vaccine than the general population, with the rare exception of having slightly enlarged lymph nodes for a few weeks (opposed to a couple of days in the general population). The benefit of getting the vaccine far exceed the risk of a CLL patient becoming infected with the virus. Including that data showing if someone with CLL becomes infected with COVID-19, the mortality rate goes from 1% in the general population to 30-40% in the immunocompromised. There are zero contraindications for CLL patients that we are aware of to getting any of the COVID-19 vaccines.
Regardless of you and your wife’s decision, please consider having a detailed COVID plan in place, as with Delta many infectious disease experts are saying if you are not vaccinated and have not had the virus yet, chances are very high that you will become infected this time around. It is so much more infectious with a reported 1000 times higher viral load and requires much less time than the previous 15 minutes of exposure to become infected. There are several articles that we have just published recently that we will share:
- https://cllsociety.org/2021/07/cll-societys-recommendations-for-covid-19-vaccinated-chronic-lymphocytic-leukemia-cll-patients-based-on-the-cdc-updated-considerations-for-people-who-are-immunocompromised-and-on-the-underl/
- https://cllsociety.org/2021/04/explaining-to-family-and-friends-why-the-cdc-guidelines-for-those-vaccinated-against-covid-19-do-not-apply-to-chronic-lymphocytic-leukemia-patients/
- https://cllsociety.org/2021/07/covid-19-plan-checklists-for-chronic-lymphocytic-leukemia-cll-preparing-for-pre-and-post-covid-19-exposure/
We hope this helps provide some perspective. Vaccination remains a very personal decision, and it is good that you are asking lots of questions and taking all things into consideration. We wish you and your wife the very best!
